One of DEBRA Ireland’s core objectives is to lobby for adequate core medical services and resources for people with EB and to positively influence health policy in those areas. Building awareness is a critical part of our work. There is a stigma to living with EB where people unaware of the condition make incorrect assumptions and their reaction can lead to upset and psychological damage for people living with EB.
In the last year, DEBRA, with the assistance of the EB clinical experts and patient representatives, has met with numerous members of government to highlight the needs of families living with EB. The more awareness of EB we can achieve among politicians and policy makers, the easier it will be to influence change on behalf of people living with EB.
Our high level advocacy work is just beginning. Over the coming year, we will continue to lobby our government representatives to highlight the needs and rights of people living with EB.
Our institutional outreach has been more thorough than ever before – whether to the government (HSE, Department of Health, Pobal), trusts & foundations or the corporate sector, we made hundreds of applications and presentations with great success. This persistent lobbying paid off in January 2017 when DEBRA secured HSE funding for the newly appointed EB Outreach Nurse.